The Vestibular Migraine Community
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I'm scared


Hi everyone and I am glad I have found this forum - very glad ! I’m Linda and I’m 58 years of age and live in Wales in the UK. I used to have migraines with auras but don’t get the auras anymore, it’s changed. - Why ?

I’ve just been diagnosed with MAV, I’ve had an MRI scan and all is ok there - thank goodness. I have just started taking Pizotifen.

When I have an attack, I talk gabble/rubbish and what scares me is my consciousness changes as well that I am not aware of it, what if I’m out at the shops etc - yikes



Sorry you are here, and welcome!

I have been in pizotifen for about 10 weeks and I’m a LOT better than I was, although not completely right yet. But I’m heading in the right direction. Nobody really knows ‘why’ MAV and not even really why the meds work, but must people find a med that helps a lot.
I found the pizotifen hard for the first few weeks due to lethargy, fatigue, general weirdness, and a drop in blood pressure from 140/90 to 116/80 in a week. However, I persevered and I’m doing ok. Working quite a lot, I can drive and use computer screens again, but not up to 100% carefree life yet.

Anyway, good luck.
Which Dr did you see?


Ps if you read a few books about migraine (Oliver Sachs, David Buchholz) then you’ll see it gives some people all kinds of weird symptoms. Don’t worry. I thought I had something fatal until I found out it was MAV…


I’m a bit jealous of all of you that have access to Pizotifen. It seems to have a fairly high success rate for people with MAV. It’s been banned here in the U.S. Does anyone know why or if there’s a similar medicine to it here in the U.S.? Thanks!


Thanks everyone, the doctor I saw was at the hospital in Telford where I had the MRI scan apart from that the other doctor is a ENT consultant here in my local village.

I have ordered Oliver Sacks book ‘Migraine’ this morning.

The Pizotifen make me really tired gidlabu but I shall persevere esp as I now know that they are helping you.



Don’t know why it was banned but I have read you can get a US doctor to give you a Canadian prescription.

I’m still alive - so it can’t be too bad. I hope :grimacing:


@gidlabu Thank you! Maybe it’s just an issue of money/big pharma/patents or something of the like. Thanks, I hadn’t heard that about the Canadian prescription. Good to know!


The side effects from the Pizotifen are reducing. I am beginning to feel a bit better but as gidlabu said but "not up to 100% carefree life yet’’